I was so excited to turn 21. I just graduated from university and had planned to take a year out, to travel, find time to focus on myself and discover my dream career. 

But along with the excitement, came a lot of pressure. In my social circles there has always been an assumption that our 21st year will be the best of our lives so far, full of new experiences and adventure. 

And don’t get me wrong, I had a wonderful birthday – but it was the months after that didn’t fit my expectations. The first half of my 21st year was spent lying in bed with agonising chest pain, unable to walk to the toilet alone. I was in hospital for weeks at a time, often being rushed to A&E. While I was hooked to a drip, waiting to feel better, I would daydream about finally having the strength to get a job and save enough money to travel to Australia with my boyfriend. 

Living with cystic fibrosis, a chronic condition that causes my lungs and digestive system to become clogged with thick-sticky mucus, means I will continue to get more and more unwell until I eventually die from fatal organ damage.

My disability has always placed a great burden on my everyday life, what with my four-hour daily medical routine,involving combinations of physiotherapy, nebulisers and inhalers, regular hospital admissions and physiotherapists, dieticians and nurses checking up on every aspect of my condition.

My illness is very unpredictable, and I am often doubled up in agonising pain, which leaves me bed bound and unable to eat for days at a time, without any warning. Frequent lung infections also mean I rely on regular courses of antibiotics which make me feel sick, dizzy and exhausted.

Cystic fibrosis is a life-threatening illness with an average life expectancy of 44, which means I am currently reaching my own middle-age. That’s why I wanted my 21st to be the best year of my life – because I honestly don’t know many other ‘big’ birthdays I will get the chance to celebrate. 

Last March, I had no choice but to move back home to shield from coronavirus. My cystic fibrosis places me in the clinically extremely vulnerable, high-risk category. I have spent months in constant fear, worrying about catching this deadly virus and fearing for those I love. 

I have had to manage my health alone, attending virtual hospital appointments and trusting my own instincts when I think I need to start more medication. In order to care for my mental health, I have been focusing on what I can do from home: making sure I get some form of fresh air each day to improve my mood, throwing myself into work, and teaching myself boxing.

This period has been tough on us all, in different ways. I know I am not alone in feeling sad about wasted time spent away from loved ones, and moments we will never get back. But my life expectancy, coupled with the dream my generation had that this decade was meant to be the 21st Century version of the Roaring Twenties, makes me worry I have lost what could have been the greatest year of my life.

I feel this constant pressure to achieve and experience more things in the time I have – that I need to fit 80 years’ worth of life into 40 years of my own. A year for someone like me is a lot more valuable than it may be for others. I have a year less to experience all I can while my health permits me to. I don’t have all the time in the world, and as I get older I will get sicker. For me, every second really does count.

It’s okay to be frustrated about losing time, especially when you know you possibly have less than others. But as cliché as it may sound, this year has shown me just how unpredictable life can be, and it’s taught me to make the most of every second. My 2020 may not have panned out how I had imagined, it was still an important year. I finally got the courage to admit to my psychologist that I have OCD, I started medication and I took time to care for my physical health. I have allowed myself to slow down, to rest and get my strength back after my health was in a very bad place in 2019. When the pandemic is over and I am free again, I will be strong enough to enjoy my life to its fullest. 

This year has shown me that I need to put less pressure onto myself.  It doesn’t matter that I didn’t get to go to Australia, that I had to cancel concert and theatre trips and didn’t find my dream job. It’s allowed me to reevaluate what’s important, I feel less pressure to look to the future, my focus is on the here and now. 

Those adventures can happen again one day. For now, my dreams are smaller.

Isabelle Jani-Friend is a freelance journalist and campaigner. Follow her on Twitter at @ijanifriend

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